Thursday, August 13, 2009

Pleased to Meet Me

MS has wrought an almost incalculable number of extreme changes on my life. Physically, the changes are obvious. Right arm and right leg on the fritz, and I quite often have a wheelchair sprouting from my backside. Changes like that are hard to miss. More difficult to discern are the internal transformations, the changes in mind and spirit.

I'm quite lucky in that MS has not dramatically damaged my cognitive abilities. Many MS patients suffer terribly from the deterioration of their memory and their ability to think. So far, at least, my faculties seem to be relatively intact. My short-term memory isn't what it used to be, but that may be more a function of age than disease. If anything, dealing with multiple sclerosis may have actually heightened my senses of thoughtful perception, and has certainly enlarged my capacity to feel empathy for all of those who struggle to simply make it through the day, sick or not.

I've lately come to realize that MS has not only altered my perception of the world around me, but also of the world within me. It's changed the way I think about myself, in some unexpected ways.

When healthy, I suffered from the common delusion of believing in the limitless possibilities of the future. Although my rational mind understood that my youthful dreams of fame and fortune were not likely to be fulfilled, there was still a part of me that half expected some huge stroke of good luck to dramatically alter the course of my life, to suddenly elevate me into the stratosphere of society. Surely, there was still the chance that I might find myself sitting next to Jay Leno, chatting about my recent Oscar triumph. Nevermind that I hadn't acted in anything since my sixth grade production of "The Sound of Music", and I was much more likely to be directing traffic than a film anytime soon. In America, anything is possible.

Well, MS pretty much doused those flames. These days, my fantasies have less to do with winning Oscars than with taking a stroll around the block, though the chances of either are probably equally astronomical. Still, I find myself dealing with the world in a much more rational way. Rather than feeling resentful that my grand imaginary life was being thwarted by the realities of my everyday existence, I now find myself grateful for the simpler pleasures; lunch with a close friend, a nice day for taking photos, or even just a few hours when the pain in my hips mysteriously subsides. Here's a universal truth, brought to me courtesy of Multiple Sclerosis: The biggest blessing on earth is a quiet night at home spent with people that you love.

MS has stripped away the many trappings of life that had become central to my self identity. High profile job in a "glamour" industry? Gone with the wind... Sexy little sports car? Couldn't even get into one these days... Fashionable clothes and fancy shoes? Ha! Putting on my socks is now a painful exercise in acrobatics, and I could just as easily use buttons and shoelaces as I could split the atom... All of those externals that once so dominated my definition of self are now mere memories, and in their place I've gradually come to know a different me, a me that resembles one that I knew a long time ago, back when I was a child unencumbered by the accouterments of adulthood.

Despite the complexities of being disabled, life in some ways is now a much more simple affair than it was when I was healthy. Absent of the concerns of career and social climbing, I find myself free to pursue my whims and desires in a kind of newfound innocence. No longer confined by the boundaries of the workaday world, I can be as eccentric as I want to be.

I've always felt like something of a living anachronism, a man born in the wrong time. Well, if I want to spend my days in 1935, now there's nothing to stop me. So here I sit, listening to The Mills Brothers or The Ink Spots, and I never leave the house without wearing a fedora, preferably at a rakish angle. After all, what sets off a wheelchair in the summer better than a nice Panama hat? I can watch baseball to my hearts content, unencumbered by worries about that big project that is due, or tomorrow's budget meetings. I can spend my days making videos, taking photos, and writing, a situation that I literally used to dream of. Naturally, those dreams never included a wheelchair mounted camera, or writing about my experiences dealing with a dread disease, but, as my father used to tell me, if you want to dance you've got to pay the band.

Of course, there are eternal worries about my illness, but somehow, these are different than the ever-changing concerns I had during my healthy life. These new anxieties are immutable, unbending, and worn like a second skin. Unlike most of the problems I encountered before MS, there is really nothing tangible I can do about my illness, so the all-pervading anxiety it produces, while wearisome, doesn't usually overwhelm the mind. I do my due diligence, fastidiously keeping up with all the latest research, and aggressively pursuing my medical options, but beyond that, there is very little control I can possibly have over what MS is doing to my body on a day to day basis. As hard as it was to come to terms with that reality, the only thing left is to let it be.

I've found this new me to be much more honest with myself, much less likely to put up with dishonesty in others (especially if they're being dishonest with themselves), and completely disinclined to be convinced to do things out of social obligation. I've learned that saying no is not an act of selfishness when it's an act of self-preservation. Often times I simply don't feel well enough to live up to the expectations that some might have of me. I'm sorry to disappoint them, but if catering to others means that I'll spend the next three days in bed, it's just not going to happen. With the love and support of my very caring (and very indulgent) wife, I'm free to pursue interests and inclinations that had long lain dormant simply because life as a working adult had left no time for them.

Make no mistake about it, having MS sucks in every way it possibly can suck, and I will never be one of those patients who claims that "I have MS, but MS doesn't have me". MS most certainly does have me, by the balls (sorry, ladies). But, in a sense, MS has given me the freedom that most human beings lose upon entering grade school. The price for that freedom has been dear, and I would never have willingly paid it, but freedom, whatever the cost, bears with it an inherent sweetness. I've learned that it's okay to savor some of that sweetness, despite the horror and dismay of having progressive MS. The disease has allowed me the opportunity to rediscover myself, and, I must say, it's been an unexpected pleasure to meet me...

26 comments:

Great post Marc. You so elequently and succinctly say what I feel...all to often. Having no cogitive issues and only physical ones allows me to still be me. Ironically, being confined to a wheelchair is liberating.

Even if you didn't have MS, I would not only be pleased, but also honored to meet you Marc. You really have a way of bringing to the surface a profound mixture of chuckles, tears, gratitude and hope buried within my soul. I can't tell you enough how meaningful and emotionally satisfying your blog is to me, and, I'm sure I speak for the vast majority of your followers.

Wonderful blog today Marc. I agree that I cannot choose what my body presents me today, but I can choose what I do with it. If I'm confined to bed, or my home, or my chair I can still choose try to be content in my mind. find pleasure in the sights, sounds, or people around me.

This is my practice. Practice meaning some days I Get an A+ on the day and others an F. Just means I have to practice more. Without this way of thinking, I would be desolate. It's what works for me. I think it helps those around me too.

Marc, I have become a loyal reader not because I have MS (I have MD) but because you write about the subtle but profound things that affect my life also. I had to retire from working 2 years ago and I experienced (and still am experiencing) the very thing you wrote about in this blog. After shedding the working life mentality, I found myself looping back in time and re-discovering the person I used to be before "adulthood" and "taking care of business" set in. I was amazed to find she still existed and that she was way cooler than I remembered!

Great stuff Marc. I've been out of the workforce for almost 3 months now. Getting MS was one adjustment, but I think going on disability is a bigger one. As you wrote- old dreams now seem frivolous, and old obligations not nearly as important. It's time to close ranks in one sense, not wasting time on people and events that are not highly important. But it is also time to open ranks to those in the world who we now have something in common with- the disabled community. Sounds like you have been doing both, and now I'm starting to as well. This post has helped me clarify my direction.

it has been a challenge going through high school with this monster. not because of any physical problems i have, i have been blessed that physical limtations have ony startd to come up, and my cognitive issuses are been mild. but the challenge is seeing the world through different eyes than most others my age.

the eyes that i see through also have been a blessing. it is just hard to explain to another 18/19 year old what you see that is different

Again, as so many other times that I have read your blog, I am in awe of your ability to express so well your day to day reality, and the good and bad that come along with MS. What a blessing that you have received through your ability to look at those things you have GAINED from having some of the things you have lost! Every time I read a post, it makes me feel more capable of finding those things within myself. I especially loved the part (the very REAL part) about how MS does have you! But even if MS has us, and even if things must change in our life, it is best when we can see the positives in the changes then lie our heads down and cry constantly over all the negatives.

pfrox9- I see my 17 year olds (boy-girl twins) who are ok physically, in the mid-stream popularity wise in High School, remember back myself have many unwritten rules High School had, thought it was IT, but finally know now it was just a blip in life, but it does leave scars, anyway I have nothing but admiration for you making your journey with such awareness. You will be a good adult.

Once again, I'd like to thank everyone for their extremely thoughtful and provocative comments. I am truly humbled by the responses many of my post get.

Michelle-I too found the wheelchair to be strangely liberating, not only physically, but emotionally as well. After denying my need for one for so long, when the wheelchair finally became a reality, my world expanded exponentially. And, between you and me, the thing's actually a hoot to drive...

Centennial-your heartfelt words really choked me up. I'm so happy that I'm able to give voice to the feelings that so many of us grapple with.

Weeble-yes, my friend, the key is living in the moment. Easier said than done, but the effort is definitely worth the reward. And I think that your attitude is definitely reflected in those around you...

Michelle-thanks for the kind words. Someone once told me that inside every 50-year-old there is an 18-year-old screaming WTF, and I don't think you need to be 50 years old to understand exactly how true that is. Glad to hear that the old you that you rediscovered is way cool. Makes it that much more pleasant to hang out with yourself...

Mitch-I'm honored that you've cited me as an inspiration for your own blogging, and as a help in coming to terms with your leaving work. The transition is not easy, but you could very well find yourself much more gratified in your new life and you ever thought you could be. If the early posts on your new blog are any indication, I'm sure many people will find your words filled with wisdom and camaraderie.

pfrox9-I'm so sorry that you've had to deal with this crap at such a young age, but the wisdom and bravery you display are inspirational. Your attitude is terrific, and will help you greatly in dealing with this damn thing. Being your age is hard enough without having to wrestle with chronic illness. You should be rewarded a medal of valor, and a few battle stars to boot...

Anita-thank you for your heartfelt response. Indeed, if we spend our time crying about the negatives, we only waste the precious here and now. Mourning your losses and feeling glum are part of the package we've been handed, but as the old song said, you've got to accentuate the positive, and eliminate the negative, as best you can...

anonymous-it truly is a shame that it takes illness to enlighten us. I'm hopeful that my example will help my healthy friends to reach a similar understanding without having to undergo having a serious illness.

Kicker-wise words indeed, and I agree with you that pfrox9 will make a grand adult.

Melinda-the decision to go on disability is an incredibly hard one. At some point, you simply must listen to your body when it's telling you that enough is enough. There is no sense in being a martyr, you've got to place your own physical well-being as your highest priority. Good luck as you move through the decision-making process.

Marc....i come here all the time and am constantly nodding my head in agreement with you. Sometimes laughing with you, sometimes crying with you. Always amazed that you say what i often think. But this time, you hit the nail on the head my friend. Thanks for sharing your journey with all of us, your an amazing talent. Janet

Marc, your words just keep getting better and better. Thank you for sharing your thoughts. You captured the essence of mindfulness without even using the word. It's something I am trying for in life ever since I got diagnosed with MS, and even when I see the word "mindfulness" I'm not sure I really know what it is. But your recent musings have had a soothing effect and I think I'm seeing it now...it's a little clearer.

I agree with centennial if not able to express it as eloquently. What he (or she ) said. THANK YOU!!!!!!!! I also would like to meet you, you are so incredibly able to put into words what so many of us are feeling. You go!!!! Keep going your blog is marvelous, you know like the old song.

Janet-thanks for the kind words. it helps me to know that there are others out there who share my feelings, so i guess this blog is a mutually beneficial thing. If I can help myself while helping others, that's definitely a win-win...

NYCrun-thanks for dropping by. I checked out your blog, it's very entertaining. The streets of New York are certainly their own show...

jstlookn-well, now I'm blushing. Thanks for appreciating my little attempts at making sense of it all...

anillo-I suppose, like all realities, mindfulness is different things to different people. The key I think is quieting both the internal and external chatter so that you can discern and live in the present, rather than cast judgment or allow ghosts of the past or anxieties about the future to throw their shadows on the now. Only in an uncluttered present can one hope to catch glimpses of the essence of "you", and of your place in the universe. Such moments of understanding are fleeting, but, like the Hokey Pokey, that's what it's all about...

Karen-when thinking about my X, one of the main elements of my calculations was my rate of progression, and where I thought I would likely be at some future point if the disease progresses unchecked. The MS experience has brought with it some benefits, but at some point my level of disability would overtake any positives those benefits could provide. I have my own mental line in the sand drawn as far as level of disability goes, over which I don't think I'd care to cross. Based on my rate of progression up until now, I'd say that line may be reached in about 18 months. So, when considering that in 18 months my quality of life may become unacceptable, it seems reasonable to use that number as my X...

anonymous-I think "thank you" are two of the most eloquent words a person can speak. So, let me say "thank you" back at you. These words of encouragement both inspire and humble me...

But I wonder what you think about social and economic oppression that goes along with living with a disability? This is a super personal question but I wonder how you feel the ways poverty threatens and looms for people with disabilities. I am thinking a fair bit about bigotry and the deep attitudes we have to deal with, not just things like someone staring, but the ways the charity model of dealing with disability affects us.

I stumbled onto your blog while looking for advice on navigating NYC in a wheelchair and I am glad I found your site. I avoid most MS-related sites and activities due to the large number of people who can’t help but feel sorry for themselves. I can’t be around all that noise about how bad things are gonna get. No one likes a whiner! Your honesty and humor are refreshing. I am not about to start singing a happy song about how MS changed my life vision but I am blessed to be surrounded by family and friends who care deeply, would do anything for me and yet pretend they don’t give a crap. I have “rock star” parking not handicapped. My wheelchair is toxic green aka Tinkerbelle green. A sense of humor and not taking myself too seriously has been my best treatment. I still work full time, although I work from home. When I do go to the office one particular person routinely told me that I “look fine” implying nothing is wrong until one day a co-worker said to him, “Last time I checked, MS doesn’t cause ugly.” I literally may not be able to stand on my own two feet and the invisible bees may be stinging my face but MS hasn’t made me ugly inside or out!

Accidentally stumbled upon your blog (first read the Frank McCourt piece, and then read this blog). I don't have MS, but I think if people would adopt your attitude toward life they would be happier no matter what their situation is. Thanks for contributing by sharing your writing, and I thank God that you have a wife who cares about and for you.

Marc: I so envy your perspective here, your ability to embrace the moment. My friends so envy my freedom to pursue my whims, watch Baseball without guilt, "sit on the dock of the bay". I cannot seem to embrace this, as i feel that these freedoms are not as sweet when not earned; that time "off" loses its preciousness when it is all you have. I struggle with the loss of sense of purpose. I have no family, so that motivation is also absent for me. I wish I could be injected with your mindset...

Beautifully said - as if from my own heart. To me the feeling of freedom is emotional survival. The need to find beauty in a terrifying situation of a deteriorating body. How could a spirit survive that kind of chronic fear? Forced to be present. It can seem a 'gift' of this disease.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...